Cyrex Labs And Enterolabs

[October3]

Quick backstory since I post here so infrequently - my 6 yr old son has had several episodes of mild iron deficiency anemia in his lifetime. A workup last winter revealed he had a tTG of 48.8 (range of normal 0-19.9) so that is "moderately elevated". His scope was totally normal so the GI said to watch him, bring him back in if he develops any symptoms (which at the present time he does not have) or come back in a year but supplement with iron in the mean time. That was January. We've checked his blood every few months since then. In April, without changing his diet, his tTG was down to 22. He was gluten-free from April to June (8 weeks) and his tTG fell further to 14 (now in the normal range). He's been back on gluten since late June. No obvious difference as far as behavior/ GI symptoms/ etc on or off gluten. So we don't really want to say he needs to be lifelong gluten free at this point. We had the thought to go to a homeopath and see what they would say (they've done food intolerance testing and stool tests to look at absorption issues/ gut flora balance on other family members). They basically said no need for more tests, just take him gluten free and once his iron stores are in the normal level then eliminate the supplements and see what happens (gluten-free that whole time). We're not crazy about this idea because it seems to involve an extended period of gluten-free with no real evidence except the tTG which was dropping before we did anything.

So I talked with a chiorpractor today who mentioned the Cyrex Labs tests and also Enterolabs stool tests. Anyone have any experience with those? What about Genova Labs Food Allergy tests (this is what other family members have had) or Genova stool testing?

My husband's idea is to retest the tTG and see if it is going up now that he's back on gluten. If we go that route how long on gluten would you think it would take to see a substantial rise? Its been 2 months now. Should we wait a bit longer?

[viviendoparajesus]

I had the EnteroLabs stool testing. It is gross but then it is over and it gave me answers I had been searching for - for years. I had the complete gluten sensitivity and gene panel. I found out I have autoimmune problems, intolerance to gluten & casein, and genetic risk for gluten sensitivity and celiac's. It was totally worth it. it has a huge advantage of not requiring me to go back on gluten. i think it can be more accurate than the biopsy since the biopsy is one tiny sample versus this is looking at a variety of factors. it looks at genetic risk and what is going on in the body.

i had the cyrex labs - cross reactivity test. the website lists the foods it tests for. they do not list it but they are looking at the milk in chocolate (pointless for me since i know i cannot have milk so i eat dairy free chocolate). i think some of the foods they test for are great - sorghum, rice, corn, oats, millet, armaneth, qunioa, buckwheat, yeast. about half of them are worthwhile, but the other half i think are a joke since they are wheat, rye, and things we already know we cannot have. in addition, i already know dairy is out so all those are pointless. that said i learned i was cross reactive to yeast and buckwheat. the one doctor said this could change later. therefore, i am not sure it is an essential test. i was real sick and i needed as much knowledge as possible since i get silent damage and could never tie symptoms to foods. it is also a pricey test. i think it is good for some people and cases. in my situation i would do it again. in ur son's case it does not seem worth it.

i do not know about genova labs food allergy tests or their stool testing.

i had the skin scratch test and it was positive for a ton of foods. which makes sense since i have a bit of a leaky gut so the undigested proteins get out into the body the body then thinks it is a virus or other nasty invader and freaks out. the doctor told me properly digested food is rendered nonallergenic. i am glad to know what to avoid for now so that i can heal and minimize inflammation. it was covered by insurance so i liked that too. my allergy doctor told me the blood testing is not very accurate except for children. and that children have a more permeable gi tract.

therefore i think it is worthwhile to have ur son stay gluten-free. he can always get tested when he is older.

i was diagnosed last year. i was so sad and angry i had to suffer so long and can feel better by eating the right stuff. i wish i had never had gluten. i imagine it could be awkward to be a gluten-free kid since society is so gluten obsessed and addicted to it but it would have felt great to know i could have a high quality of life and not be sick and jeopardize my health. i would want my kids to be gluten-free even if they do not have gluten intolerance. the body just does not seem built to digest gluten. they could always get tested later or choose to have gluten. but if u never have it u do not know "what u r missing" or had to "give up." also kids r growing so they are so vulnerable to allergies and problems with foods so i would want to protect them. also the foods we should be eating fruits, vegetables, meat, fish, beans are naturally gluten-free and natural (vs processed stuff that is bad for us).

i totally recommend the book allergies by dr carol bateson-koch.

best wishes!

[Jestgar]

I guess I would go with your husband's plan. Enterolabs isn't widely accepted by physicians, and food allergy testing is inaccurate.

Give him another month on gluten and retest. If it's positive, you have your answer, if it's negative, I'd still consider testing every year, especially if the anemia persists/returns.

[October3]

  On 8/19/2011 at 2:45 AM, viviendoparajesus said:

I had the EnteroLabs stool testing. It is gross but then it is over and it gave me answers I had been searching for - for years. I had the complete gluten sensitivity and gene panel. I found out I have autoimmune problems, intolerance to gluten & casein, and genetic risk for gluten sensitivity and celiac's. It was totally worth it. it has a huge advantage of not requiring me to go back on gluten. i think it can be more accurate than the biopsy since the biopsy is one tiny sample versus this is looking at a variety of factors. it looks at genetic risk and what is going on in the body.

i had the cyrex labs - cross reactivity test. the website lists the foods it tests for. they do not list it but they are looking at the milk in chocolate (pointless for me since i know i cannot have milk so i eat dairy free chocolate). i think some of the foods they test for are great - sorghum, rice, corn, oats, millet, armaneth, qunioa, buckwheat, yeast. about half of them are worthwhile, but the other half i think are a joke since they are wheat, rye, and things we already know we cannot have. in addition, i already know dairy is out so all those are pointless. that said i learned i was cross reactive to yeast and buckwheat. the one doctor said this could change later. therefore, i am not sure it is an essential test. i was real sick and i needed as much knowledge as possible since i get silent damage and could never tie symptoms to foods. it is also a pricey test. i think it is good for some people and cases. in my situation i would do it again. in ur son's case it does not seem worth it.

i do not know about genova labs food allergy tests or their stool testing.

i had the skin scratch test and it was positive for a ton of foods. which makes sense since i have a bit of a leaky gut so the undigested proteins get out into the body the body then thinks it is a virus or other nasty invader and freaks out. the doctor told me properly digested food is rendered nonallergenic. i am glad to know what to avoid for now so that i can heal and minimize inflammation. it was covered by insurance so i liked that too. my allergy doctor told me the blood testing is not very accurate except for children. and that children have a more permeable gi tract.

therefore i think it is worthwhile to have ur son stay gluten-free. he can always get tested when he is older.

i was diagnosed last year. i was so sad and angry i had to suffer so long and can feel better by eating the right stuff. i wish i had never had gluten. i imagine it could be awkward to be a gluten-free kid since society is so gluten obsessed and addicted to it but it would have felt great to know i could have a high quality of life and not be sick and jeopardize my health. i would want my kids to be gluten-free even if they do not have gluten intolerance. the body just does not seem built to digest gluten. they could always get tested later or choose to have gluten. but if u never have it u do not know "what u r missing" or had to "give up." also kids r growing so they are so vulnerable to allergies and problems with foods so i would want to protect them. also the foods we should be eating fruits, vegetables, meat, fish, beans are naturally gluten-free and natural (vs processed stuff that is bad for us).

i totally recommend the book allergies by dr carol bateson-koch.

best wishes!

Thanks for all the info. I really appreciate your perspective. Just curious if you have trialled the foods that came back positive to be sure you really react? My experience with the Genova food allergy testing was that I came back positive to lots of foods and I eliminated them all for a few months and then reintroduced but found that very few caused any obvious symptoms. The mainstream medical doctors primary arguement against these tests is the high rate of false positives, so I just wonder whether its worth it to pursue the Cyrex ones (I'm not sure if they are different in terms of specificity and sensitivity).

[October3]

  On 8/19/2011 at 2:55 AM, Jestgar said:

I guess I would go with your husband's plan. Enterolabs isn't widely accepted by physicians, and food allergy testing is inaccurate.

Give him another month on gluten and retest. If it's positive, you have your answer, if it's negative, I'd still consider testing every year, especially if the anemia persists/returns.

I'm inclined to go this route as well. Seems the most financial friendly option as well as the option with the best chance at showing conclusive results. If his tTG goes up on gluten and down off gluten then that's pretty convicing evidence gluten is causing things to happen that we don't want. I just don't really understand why it went down with no dietary changes at all.

[The Horticulturalist]

  On 8/20/2011 at 2:08 AM, October3 said:

I'm inclined to go this route as well. Seems the most financial friendly option as well as the option with the best chance at showing conclusive results. If his tTG goes up on gluten and down off gluten then that's pretty convicing evidence gluten is causing things to happen that we don't want. I just don't really understand why it went down with no dietary changes at all.

October, I just had my son's blood results reviewed (for nothing) at the UofC Celiac Disease Center hotline, they were very helpful indeed, I can't praise them enough. I talked to them on Tuesday and faxed them the copies from my doctor, they emailed me back today.

I don't know if biopsies are kept or destroyed, but if they are perhaps one of their GI pathologists could look at your sons results?